How the Scottish Government’s £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS is a matter of concern for ME Research UK. Indeed, the September 2025 funding announcement failed to mention a commitment to ensure NICE compliant ME/CFS options at all. Given the dire lack of provision of NHS Scotland services currently available for those with ME/CFS – as evidenced by the Scottish Government’s own report – how the funds available will be utilised is of particular interest.
When Ben Macpherson MSP tabled a question to enquire how the funding proposal of £4.5m, covering a number of areas, would impact ME/CFS – especially in implementation of the ME/CFS NICE guideline – now Scotland’s “the default clinical guidance on ME/CFS“ – there was no mention of ME/CFS other than “It is expected that NHS boards will develop support based on their understanding of local population need and synergies with existing local service provision.” This led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency – Highland, Western Isles, Orkney and Shetland NHS Boards.
Ms Grant therefore asked, as an example,
Considering the Scottish Government’s announcement on ‘Funding long COVID services’ (which encompasses ME/CFS services) –
- How does NHS Highlands intend tailoring appropriate and NICE NG206 compliant services for those
affected by ME/CFS and how will it ensure services meet best practice as benchmarked by NICE –
especially for those severely affected? - How much is NHS Highland’s share of the allocated annual £4.5 million.
ME Research UK, in turn, made requests to the remaining 11 NHS Boards.
What Each NHS Board Plans
- NHS Ayrshire and Arran
- NHS Borders
- NHS Dumfries and Galloway
- NHS Fife
- NHS Forth Valley
- NHS Grampian
- NHS Greater Glasgow & Clyde
- NHS Highland
- NHS Lanarkshire
- NHS Lothian
- NHS Orkney
- NHS Shetland
- NHS Tayside
- NHS Western Isles
It is clear that some Boards will be collaborating with neighbouring Boards; that ME/CFS cover which was wholly lacking before in Scotland will be provided in conjunction with long-COVID services and that NICE compliance is stated to be central but services are largely being overlayed onto those for long-COVID with little appreciation of the specific needs of those with ME/CFS – especially those most severely affected. It is also clear that the Boards are or will rely heavily on outside agencies – not all with apparent ME/CFS expertise – to provide essential guidance. With limited funding to NHS Boards, limited knowledge, and limited ambition it remains to be seen how these new services will serve Scottish ME/CFS patients.
Taking long-COVID alone, the Scottish Government estimated that 168,000 people (3.2% of people living in private households) in Scotland had self-reported long COVID in March 2024. In Scotland, for ME/CFS utilising the most recent figures and acknowledging limitations such as definitions, recording, coding differences, and overlap etc (population 5.55m and rate of 0.6%) would indicate 33,300 people are affected. Not counting other illnesses which will be encompassed within the new clinics’ remit e.g chronic lime disease, the care spend of £4.5m per annum over potentially 201,300 souls is only £22.35 per person for an entire year’s care. It will be far lower if the prevalence rates are indeed under-estimates and all other conditions are included.
